Ewings Sarcoma

Friday Fighters

Survivor to Advocate: An Interview with Andrea Tsang Jackson

Andrea Tsang Jackson Interview at Quilts for Cure

Quilts for Cure exists to raise awareness about childhood cancer and make quilts for kids with cancer. We honor Smiley Kylie Myers by making quilts to encourage other kiddos. A beautiful side effect of this work, is that quilters who are passionate about this cause are creating their own community. I love hearing the stories of all the quilters who are part of Quilts for Cure, but when Andrea sent me snippet of her story, I had to pull off the road and read it immediately. We have been honored to have many adult cancer survivors be part of our efforts to send quilts to kiddos with cancer, but as far as I know, Andrea is the first childhood cancer survivor to be part of our work. 

Here and Elsewhere Bee Quilt

Here and Elsewhere Bee Quilt

Andrea Tsang Jackson of 3rd Story Workshop is an amazing modern quilter who has a passion for storytelling. While her textile arts have focused on the stories of others (like the Here and Elsewhere Bee Quilt above and the Our Song Quilt below), I had the privilege to ask about her story for this interview. As a child, Andrea faced Ewing's Sarcoma, the same cancer that Kylie and Bailey had, and learned some beautiful truths about hope and community.

Andrea is an amazing story of hope and an asset to both the quilting and childhood cancer communities. Thank you for sharing with us, Andrea!

If you would like more information about Andrea's most recent project, Our Song Your Reflection, click here to learn about and consider supporting the project. And stay tuned for when the music video releases-- you'll be able to spot a Quilts for Cure project in the mix!

Andrea Tsang Jackson Interview at Quilts for Cure (Our Song Quilt)

(All photos curtesy of 3rd Story Workshop)

Friday Fighters

Friday Fighter: Gayle Katzenback, Age 20

Gayle Katzenback, Swings Sarcoma Warrior

Good morning, Advocates and Warriors!

I know it's not actually Friday, but this story just can't wait because I need your help! 

Almost two years ago, an 18 year old Gayle was diagnosed with Ewing's Sarcoma. Her doctors were hopeful about her prognosis at the time, but after a year of typical cancer treatments, her cancer stopped responding and spread throughout her body. In December 2016, Gayle's doctors said she had stage 4 cancer, that there was nothing more that they could do, and she had six months to live. Gayle's family decided to look for other treatment options and have since been pursuing alternative methods in Arizona. NINE months later, Gayle is still fighting and her body has showed response to the treatment. Hooray! 

However, Gayle still has a long road full of treatments and struggles ahead of her. That means that she needs a quilt! Even more, she has two friends who are in treatment with her: 

Christine Danielle
18 years old - Fighting her 3rd Recurrence for Ewing's Sarcoma

Jazmin Ayotte (Soon to be Henson) 
20 yrs old - Stage 4 ACC

I'd like to send 3 #OperationSmiley quilts to Arizona for Gayle, Christine, and Jazmin. 

This is where I need your help.

The quilts are ready to go, but we need about $50 to cover shipping fees.

Please give $5 or $10 to help!

There is also a fourth friend being treated with these young ladies: Christie-- a wife and a mama of three littles with Stage 4 throat cancer. While QFC focuses on pediatric cancer patients, if you would like to send Christie a quilt (or quilts for her kiddos to comfort them as their mama fights), I would LOVE to connect you with her!!

Thank you all SO MUCH!

Go Gold,

HollyAnne

Friday Fighters

Friday Fighter: Abriel Bentley, Age 9

Abri Bentley

My dear Friends,

My heart is heavy for sweet Abriel and her family tonight. Tonight I share a story that I've been following for a little while, and it is a story that was so full of joy and now has struck a terrifying plot twist still unfolding in real time.

First, here is the first part of Abri's story, written by her Mama on their Team Abri Facebook page:

"At 7:30 PM on Friday September 4, 2015 we received a knock on our hospital room door that changed our lives forever. Our beautiful, spunky, full of life little girl was diagnosed with an extremely aggressive form of bone cancer called Ewings Sarcoma. It all started a week earlier on a Thursday night while saying her bedtime prayers, Abri suddenly had a pain in her left leg below her knee. Assuming it was nothing to worry about we tucked her into bed. Friday morning Abri woke up with pain in that same spot so I assumed she probably pulled something in her leg, gave her some medicine and sent her to school. At school that day Abri went to the nurse once and was given icepack for her leg but was otherwise pain free. That evening she still said her leg was sore but bearable and again we tucked her into bed without any worry. At 10:30 PM she woke up screaming and holding her leg. Knowing at this point there had to be something wrong, we took hr to the ER where they ran X-rays and saw nothing of concern. The doctor told us that Abri's pains were growing pains and to not worry and give her Tylenol and Motrin until the pain subsided. Saturday and Sunday the pain continued off and on and she began limping. At some points the pain was so bad that she would scream and cry but then it would go away again. Monday morning the pain was still there and the limping was getting worse so we made an appointment with Abri’s pediatrician. The pediatrician could not figure out why Abri was in so much pain and also assumed it was growing pains. He sent us off to get labs drawn just to safe and told us that if it didn’t improve in another week that we should try to get her in with an orthopedic surgeon. By Wednesday morning we had had enough of Abri being in so much pain so my husband started calling around to orthopedic surgeons in the area hoping to get Abri in to one of them as soon as possible. One surgeon at Phoenix Children’s Hospital had and opening at 1:00 that afternoon so I picked Abri up from school and my husband drove her down for the appointment. I had no idea that this would be the last day my sweet girl would be attending her second grade year with her friends. The orthopedic surgeon at PCH immediately knew something was not quite right and decided to admit Abri for an MRI. That evening Abri was put under anesthesia for the first of many times to come and an MRI of her leg was taken. We were told that something appeared on the MRI and that they assumed it was a bone infection and they would be performing surgery in the morning to clean it out. The next morning Abri was put under anesthesia again for surgery but things did not go as planned. We were told that when they opened up Abri’s leg they did not see what they had expected so they did a biopsy and we would hear back in a week or so. Cancer was never even mentioned as a possibility. We settled into our room on the 7th floor while the pain team worked on trying to control the extreme pain Abri was now in from the surgery and waited for results. I remember walking up and down the hallways seeing all of the rooms that contained little bald kids and bright yellow Chemo signs and thinking “at least my baby girl does not have cancer.” I felt so sorry for the exhausted and terrified parents I passed in the cafeteria and felt so grateful that at least we weren’t one of them. Then came the knock on the door. A moment frozen in time that still brings me to my knees. Thankfully, after several more tests, it was found that Abri’s cancer had not spread to any other parts of her body. She began her 17 rounds of chemo the next week, which took a year to complete, and she had limb salvage surgery on Dec. 23, 2015. The tibia, which contained her tumor, was removed and an adult cadaver arm bone was put in its place. Abri spent 9 months in a wheel chair, lost all of her beautiful long blond hair, endured numerous pokes, shots, transfusions, scans and surgeries but is now in remission and learning to walk again. She is back in school full time and enjoying every minute of “normal” life. God is good!"

Happy Birthday, Abri

For the last couple of months, as Abri finished her school year, she began having pain in the cadaver bone they had transplanted in her leg in 2015. On June 19th, Abri had surgery on her leg during which they removed the bone because the doctor's discovered it had split vertically. Tonight, her Mama posted horrible, heart wrenching news:

"PLEASE STORM THE HEAVENS WITH ALL THE PRAYERS YOU CAN!!! PLEASE!!! We just got the call that Abri's cancer is back. They found it in the bone that they took out. Now we are headed to the hospital for more testing over the next couple of days to see if it is just in that bone or anywhere else. If it is just in that bone she has a chance. PLEASE I AM BEGGING FOR PRAYERS FOR IT TO JUST BE IN THAT BONE!!! PLEASE!!! PLEASE!!! PLEASE!!! 🙏🏻🙏🏻🙏🏻🙏🏻"

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THIS IS NOT OKAY. CHILDHOOD CANCER IS NOT OKAY. Please, like Abri's family, I'm begging you: Take ACTION:

  1. PRAY like you have never prayed before-- for Abri and for the other 42 children and their families who were diagnosed today.
  2. QUILT Abri is a spunky 9-year old girl who needs a colorful, cheerful quilt. Twin sized would be ideal, so it can brighten her hospital room as she faces the tests and treatment ahead. Please email me at hollyanne (at) quiltsforcure.org if you can send a quilt ASAP.
  3. GIVE Please support Quilts for Cure financially. The money you give provides quilts for kids, helps us spread awareness about childhood cancer, and helps to find a CURE through Cure Childhood Cancer's nationwide research programs.

Share, share, share this. Also, Abri's family would benefit from a wheelchair that is just her size. If that is something you could provide, so they don't have to wait months and months on insurance, please email me at the address I mentioned above.

Fight on,

HollyAnne